YOU LIVE AS LONG AS YOU ARE REMEMBERED

It has been said ” YOU LIVE AS LONG AS YOU ARE REMEMBERED” -a Russian Proverb

I have been thinking about my New Years blog. What to do? How to start off the New Year and not write about the typical topics -Cleaning out the clutter-New Years Resolutions or the NEW diet. I figured we can always talk fresh starts, so I chose to stick with a topic that is true to me “CREATING MEMORIES” , being remembered.

I wouldn’t be me if I didn’t take a light hearted fun approach to my topic. The typical way to document or help others remember you is answering the basics Q & A style. 1) date of birth 2) where were you born blah blah boring. Ok boring is harsh but that would be ordinary, same old stuff. I am anything but ORDINARY.
I thought for January we could start something fun. My hope is of course that you will participate. The project will require some written participation ( There is something about the written word.)
The idea is GMF will post fun questions for you to create memory making moments, a “TO BE REMEMBERED” , did you know? book. This is meant to be a fun project not a boring HAVE TO. We are looking forward to interaction on the fan page. Everything we ask you to answer is for your keepsake. If you want to share that’s up to you. We hope this will help you create a fun #memorymakingmoment.

YOU WILL NEED:
a note book/journal Call it what you like. You need something to write the questions and answers on. Be sure to number each question and write it along with the answer.

Here is the plan,
We are going to give you a question a week on MONDAY. We just want you to be sure to write it in the book and answer it. You can ask other friends and family members to participate it will be a fun way to have written #memorymakingmoments it’s our #didyouknowMondays.

We may post extra questions throughout the week add those if you want.

If you have questions you want us to share send privately and we will post to the group or You are also welcome to post the question in the comments .

Life changes everyday let’s LIVE and be remembered. (Our questions are to just get you writing)

* BACK ROUND TO THE IDEA.
A few years back probably 15 I gave my G-ma and my PAP PAP books about sharing memories. The books were a question a day books “tell me your memories”. Well my PAP PAP finished the book as soon as he got it so in 1 year. It is my treasure. (he died from Alzheimer’s. 4 years ago) What is so awesome about the book is it is in his hand writing. I learned so much about him some I knew but a lot I didn’t. What a gift a little book with some simple questions but to see his handwriting forever. I learned His mom my great grandma was a candy maker. ( PROOF I WAS DOOMED to HAVE THESE HIPS lol) & double whammy because my dad’s mom My GMA was a donut maker BOTH SIDES OMG born to be a sugar addict it was in my blood for sure LOL.
Anyhow I gave the similar book to my grandma his wife ( She’s 91 I over see her care now). She took a little longer 12 years later I got it back. It’s wonderful to read and I am so glad I have it but I must say the fun questions I ask her out load now that she is 91 is even more fun. For example I learned my grandma at 89 had never had a pedicure or manicure or GIRLS GET THIS she never had a bubble bath. Well as you could guess YEP this crazy NON ORDINARY grand daughter helped give her 89 year old gma her first BB.
SO many other questions I ask that I am sure many of you would crack up if you knew. It’s the answers that would have you ROFL. I will save for another blog.

Reality check : (
Having my dad’s mom died young 62 and the family was in great turmoil over it. No time for gathering anything that wasn’t already written. My only memories are what is in my head. I have maybe two photos and one piece of paper with her handwriting I CHERISH IT! Reflecting on this , I chose to use this situation as a way to make my pain not be in vain. It was the nudge to share what’s important being remembered.
After working on this post I did find links to some memoir books. I will post links to where you can buy the books and get the basic need to knows answered. They have them for MOMS, DADS, G-PA, G-Ma, & I encourage you to get them. Great gifts. You will be glad you did. I completed one for my kids shortly after I was diagnosed so my kids have one from me. Don’t wait for an illness. Do it just because. Please if your loved one can’t write ask them the questions write their answer. Brain Buddies life is fragile we know that. We will all be remembered, the question is HOW?

Let’s have some fun #MEMORYmakingMOMENTS #DIDYOUKNOWMONDAYS

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Glioblastoma Research News

In November, Lanette had the opportunity to attend the 19th Annual Scientific Meeting and Education Day of the Society for Neuro-Oncology presented by the Society for Neuro-Oncology. During the event, she was able to witness the unveiling of some exciting news! For the first time, it was announced that doctors have discovered a new treatment plan for patients with glioblastomas.

Doctors have created a device that glioblastoma patients can wear on their heads. Patients place the cap on their scalp and wear it constantly. The device provides low intensity electrical fields that stop tumor cells from dividing. Patients who received the treatment lived three months longer on average! Although this is not a cure, that is an amazing step forward in providing patients with more time with their loved ones. After the success of the treatment for glioblastoma patients, doctors are considering other applications for the device.

Below are pictures from the conference provided by Chris Tee from the International Brain Tumor Alliance. The New York Times published an article on the new treatment, click here for the full article. Have questions? Need support? Contact Lanette at graymattersfoundation@gmail.com or 623-205-6446.

Here is Lanette’s take on the exciting weekend!

“My trip to Miami was action packed. Always nice to see those I know and it was great to catch up. Funny when you have to fly to another state to catch up with those that live in the same state. I met up with my good friend and BESTIE BRAIN BUDDIE Sheryl Shetsky President of Florida Brain Tumor Association aka “BRAIN TUMOR DIVA”. We used this opportunity to connect with the medical community and put a face to our organization. Our goals were to share what we do in the brain tumor community with those we didn’t know( educate them of our mission statements which are very different) #2 remind those who do know us that we are still ALIVE “SURVIVING” and remind them we are here to support any of their patients and families. Of course Sheryl’s FBTA raises money for research so her conversations were a little different but we both did what we do best. A big part of attending events like these is to learn lot’s so we can stay ahead of the tumor. What that means is: NEVER CHASE YOUR TUMOR!!!!

Sheryl taught me in one of the first conferences I attended stay ahead of your diagnosis. Never wait for the reoccurrence to start survival search. Stay ahead of it know what’s out there. What are the new and up and coming treatments-technology. What docs are doing what. Well we followed her rule and did just that. We attended the education day and even participated in some lunch break out sessions. Of course this is a doctor and researcher event so some of it was over my head FOR SURE! Over all good things are happening in the world of brain tumors A LOT with GBM’s. The most moving breakout session for me was Neuro Oncology Caregiving. What Do We know and Where Should We Go? Obviously if you know anything about GMF you know this is my heart.

This year’s attendance at SNO I met and established what I am hopeful will be some long lasting friendships. We attended the welcome reception where we had the chance to catch up with Sheryl’s good friend, board member and moderator for FBTA conferences Dr. Steven Brem and his wife , we also met with Arizona’s very own Michael E Berens from TGEN and his wife. I even shared photo’s on our fan page of some of the researchers who think BRAIN TUMORS STINK! Lastly and a worth mentioning “IF ONLY FOR ONE” (I had so many but this is the best ) The Gala was on Saturday and over 300 attended. It was held at the Perez Art Museum it was TOP NOTCH! We could sit where we choose it was a nice outdoor event moonlight just beautiful. The table is a ten top. We are chatting with several of the people at our table and one of the people at the table is the President and CEO of a company that develops oncology drugs. The IF ONLY FOR ONE PART. So we are talking about longevity and how Sheryl is 25 years out with a brain stem glioma and me with Grade 3 Aniplastic Oligo. We talk about GBM buddies and of course I honored my beloved sweet friend david m bailey. This man lives in the same small town david lived in. He starts to tell us how when they invested in this “brain” treatment people started talking about a young man who had lived with a brain tumor yadda yadda. Well Ta DA, I honored my promise. I was able to share the legacy of my sweet friend. I put a face to the young man who was the man who shared hope through word, song. Funny how these things work. I attended my first SNO conference when I managed David’s tours, and would only see him at FBTA conferences. I think our one was not seen but was still close at heart. We had a great weekend.”

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The November Thankfulness Challenge

Happy November! Everyone thinks of Thanksgiving at this time of year. What do you have to be thankful for? Research has shown that being thankful can improve your overall health – physically, mentally and emotionally, including better sleep patterns, and even heart benefits. Research has also found that another benefit of regularly feeling thankful or grateful is a strengthened immune system. So keep those thankful thoughts flowing! Some days that feels harder than others, so Gray Matters is hosting a challenge to get you in the habit of feeling thankful this month.

You may have noticed recently that we’re posting simple and fun exercises on our Facebook page. The November Thankfulness Challenge started on Monday with a challenge to post a picture of something you are thankful for. Keep a look out for the challenges each week on our Facebook page. Let me know how you’re doing with each exercise, I’d love to hear how my Brain Buddies are feeling after taking each action! Here is the full list of the challenges:

Week One, Mon Nov 3: Post a picture of something you are thankful for

Week Two, Mon Nov 10: Write a letter, text, or call someone you are thankful for

Week Three, Mon Nov 17: Perform a simple act of kindness

Week Four, Mon Nov 24: Give a hug to everyone you are thankful for

That’s it! It really is this simple to feel more grateful each and every day, but sometimes we all need a little support to get there. That’s where your Brain Buddies come in! Visit the Gray Matters Facebook page throughout the month and leave a comment, photo or even a video on our wall letting us know how the exercises are going and the benefits you’re receiving. You’ll be doing great things for your own health and encouraging others at the same time! Have questions? Need support? Contact me here.

 

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What Is ‘It’?

I am often asked “How do you do it?”

I just do.

You see, I don’t even have to ask why I do what I do. When you’re doing it, it is part of your daily life, it just happens. Others will always want to know how, and it’s difficult to explain.  It’s natural, a part of me.  I didn’t train for this, I didn’t plan to begin a non-profit, to help support those in need, to bring them comfort. The cause found me.

If you are reading my blog for the first time, you might be wondering what is ‘it’?   Sometimes I ask myself that very question.   The ‘it’ that people question is never the same for two people, or it could be different day to day.  For instance, recently it was being with a Brain Buddie and her family as she is preparing to leave this life. She didn’t plan this. Her family didn’t plan this!  The ‘it’ was walking into a home filled with heartache but knowing that even if for just a moment If I can share FAITH, HOPE or LOVE then ‘it’ is being accomplished. I pull up to the house praying for guidance on my journey today. I walked in to see my friend in her hospice bed. She was receiving meds so I was able to spend a few minutes with her family.

My ‘it’ was whispering in the ear of my friend what an amazing champ she has been throughout her fight with this brain tumor. I shared how much I love her and more. It was making sure her family knows they are loved and that I am hurting with them. No silly words, nothing from a script, just the real me, a friend to the end!

A friend loves at all times. Although I hate what this disease has done, her memory will not be stolen by the brain tumor. I told her I will keep her story alive and tell other buddies she beat the odds!  She is our champ. It was a tough day but this is what I am called to do.  This is what ‘it’ is. (this was written Tuesday

I love my brain buddies.

 

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September 2, 1998

Sixteen years ago my life took a completely different turn. On August 12, 1998 I was diagnosed with a baseball size mass. On this day, September 2, 1998, I had it removed, and learned it was a grade 3 Anaplastic Oligodendroglioma. Between then and 2007, I have had 5 surgeries. Before the tumor, I worked as a banking relationship manager. It’s funny how life-changing events can alter your path. I have found support more than statistics is vital to helping share hope or encouragement.

In 2001 I sent my first gift package to a fellow brain tumor patient. That was the beginning of Gray Matters Foundation. You can read my entire story here.

Now here I am, sixteen years later, and Gray Matters and I are still going strong. It’s my ‘Sweet 16’, as my husband has dubbed this year, and we are going to have a celebration. On Saturday, September 20 at 5pm we will be having a party at the Dirty Pelican in Glendale, and will feature delicious food and there will be many baskets and other items raffled, and each will be in honor of one of the many Brain Buddies I have met over the years. We also will have music provided by the 80’s rock band Sluggo, and that will be a great finale to the evening. The whole evening is going to rock! You can get more information and RSVP right here.

I’ve met so many people along the way who have been affected by brain tumors, either directly or indirectly, and on this night we will celebrate and honor everyone. I am so grateful to be able to offer support to all of our Brain Buddies, I hope if you are in the Phoenix area you are able to come out on September 20 and join us. Let’s show everyone at The Dirty Pelican that night that brain tumors stink, that’s what we think!

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Where does time go?

Time erases no memories.   22 years ago  I sat with my grandma while she took her last breath.  Harsh to say but rather peaceful considering my personal belief is she is in heaven now.  The 9 weeks leading up to that evening were such a whirl wind.   I know listening to me tell you how I miss my then 62 year old grandma to some hardly compares to the loss when they are dealing with the loss  of a spouse or a child or a dear friend for that matter.   I am not here on this blog to create a RATING SCALE of who’s pain is better or worse.   LOSS SUCKS and everyone experiences it differently and in their own way!  At the time  of her death I was 22 with a 2 & 3 year old my life was so all over the board.  I needed her and she was dying I was devastated .  Her death was my first experience watching, holding the hand of a loved one dying from a  brain tumor.  For that matter it was the first person I had been with  EVER while they were dying / died .( never dreaming I would be with countless holding their hands in years to come)    All  I knew was this stupid abbreviated 3 letter word  GBM was killing my grandma and it did so in 9 wks after having her brain surgery.   Sparing you all those details the loss is real.  22 years she is missed but will never be forgotten. My heart will forever have a space that contains the love we shared.   Over time the pain has softened and as many say ” LIFE GOES ON”.    In my life it has gone  on  but I do so with  keeping  her memory alive.  I am not stuck in sadness but I am sad for the things I didn’t get to enjoy with her.   I realized some years back I can do things to keep her memory alive or let that die also.  So to me LIFE WINS and when I tell stories of who she was,  sharing her LIFE  the brain tumor looses.  You see the tumor died when she did.  Her memory lives on as long as we keep telling her story and the tumor part is so small in compared to all the other goodness. If she were  here she would be 84 in a few weeks now that’s crazy.   When I am with family I’m  usually the one who brings her name up and then we share stories and we giggle .  The best are the ones that make you smile or even tear. (  Now of course their are jokesters in every family) .   I have to slap my dad and my uncle on behalf of my GMA  a heavenly one of course .  They tend to get to funny and start sharing  the TMI stuff  UGH my grandma If she could hear them  she would say their names so STERN when they acted funny like that.  My family  , cousins and sibling who will remain nameless but who  are reading this I can see you smiling and you know exactly what I am talking about when it comes to dad and Uncle.    OH and her  food she made lot’s of yummie stuff but mmmm.  the most noted  was what she made at work ,she was a baker.    HER DONUTS! and everytime I smell one I think of her.  MMMM the yummie WINCHELL donuts she baked.  ONE PROBLEM ( a minute on the lips has caused  a lifetime  of  exercising for these HIPS!) trust me those donuts were dangerous on the girls in our family LOL.  SO we share about Grandam because we love,  because she is important.  Many people don’t know what to say to friends that loose a love one.  Maybe not right away  but we do like to share memories. It’s ok  to talk about those we miss and love even though they are gone.  It’s when you don’t talk about them that it hurts us.  Tonight 22 years later I remember it like it was yesterday.  The crazy part, the end of her journey in this life was all part of what came to be  the beginning of what I was called to do today .   The creation of  GRAY MATTERS FOUNDATION.  You just never know what comes of life’s journey and if you listen closely and  you handle it with care . It all works out.   I sure  didn’t see this coming.  Back then and now she was and is my first &  FOREVER #ifonlyforone

 

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If Only For One: Choices

Sometimes, If Only For One can be a choice.  Making one little choice can greatly alter your course, and you may not even realize it.

As many of you know my birthday was on July 7th and my mother’s is the 8th.  I wouldn’t see Mom on her birthday, so I asked her to meet me for ice-cream on my birthday (it was a spur of the moment plan but I thought it would be a nice treat and just the two of us).  I also had to take care of a payment for a credit card that was due. I figured I would pay it online rather than dropping it off because I needed to get to my date with Mom.

I made the call and the payment. At the end the auto system said “if you are processing this after 5:00pm it won’t post for two days” because it was considered after hours.  It was a balance of $10.00 and it would have a $25.00 late fee. I decided to go in and make the payoff in-store and avoid a $25 fee for a $10 final balance. I decided to enjoy my time with my mom first and stop by the store after to pay the $10.00.

When I made it to the store, I asked the girl at the register if the payment had been made. She was new to the job and didn’t know so I went to customer service. They said an in-store payment is processed the same day because it’s local. If you pay online or on the phone it’s back east so it is considered late.

As I was leaving the store, the cashier saw me at the door and asked about the answer to my question. She felt bad for not being able to tell me. I told her, and said no worries. I explained there are many things to get upset about; life is too short you just never know what can happen. This was not an issue.

Well, that being said, I was driving home and it’s about 15 minutes away.

Earlier when I phoned to make my payment, the automated message told me the processing time. This prompted when I chose to go by the store to pay. I made a choice to pay after ice cream.  I could have gotten upset and been a jerk to the cashier, but made one little choice to keep Peace.

25 -30 minutes earlier, on the very street I would be traveling on, a car ran a red light. It hit a car in the lane I would have been in.  They were re-directing traffic and the way I would have been traveling if I had been returning from my ice cream date. I could have been the one, the one who was hit.

When I talk about IF ONLY FOR ONE it can be in all we do. One choice can cause a chain of reactions, or a change of ACTIONS. I know one thing for sure, by taking the less stress and lighter look at situations, tonight I was the one who was spared.

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Brain Buddie Gives Back: Way To Go, Flo!

Flo is a Brain Buddie who jumped right in to help and give back. She is one of my biggest fans and is not shy about telling anyone and everyone about Gray Matters. I met her at the local support group I facilitate. Right from the start she went full force into helping others as a way to give back. She felt she was beating something meant to beat her, and she wanted the world to know that’s not the case. After receiving a few cards and goodies from Gray Matters it was clear she wanted to do the same and became one of our official volunteers. Flo writes:

“My Army military service was both active duty and reserves from 1971 to 1998 for 27 years of duty. At work one day at BC/BS (medical health coverage) on a Monday I had a bad headache and saw my neurologist and on Wednesday I still had a severe headache and he told me to go to ER. Arriving about 9:00 AM (Phoenix Baptist Hospital), a diagnosis of a brain tumor was confirmed by CT/MRI, by 3:00PM with next day surgery set for 9:00PM. All within 30 hours I had surgery on October 2009. 5-days later the lab confirmed glioblastoma multiform Stage 4. As of October 2014, I have been a 5 year survivor. Participating in Gray Matters Foundation has been and shall always be a blessing to all.”

Flo has been an amazing supporter and Brain Buddie. She has made Gray Matters over 200 cards, and mails them out. She has donated time taking photos for events we participate in and she has committed to keep scrap books for all to see and learn about the foundation.
An example of what an amazing Buddie Flo is: I just received a package of cards and a book of stamps from a friend Flo met at an appointment at St Joe’s. She wrote me a personal note, and sent me 20 cards and stamps to cover the cost to mail them. She thanked me for what I do because Flo shared such nice things. Flo is doing exactly what “IF ONLY FOR ONE” IS ALL ABOUT!

She has rallied her husband Paul (or “what’s his face”, as he likes to call himself) to get involved as well. We are so fortunate that they are able to contribute in so many ways to Gray Matters Foundation. Way to go Flo you are our ONE! You are one OUTSTANDING BUDDIE!

For more information about how you can become a Brain Buddie, please visit http://www.graymattersfoundation.com/brain-buddies/. For information on how you can contribute to Gray Matters Foundation, please visit http://www.graymattersfoundation.com/contact-us/.

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Grandma, the neurosurgeon, a tree and me…a story of coincidences and love

I’m so pleased to be given the opportunity to share this story in International Brain Tumour Alliance’s annual magazine, “Brain Tumour.” I got the chance to share this story about my neurosurgeon after sharing it in conversation.

This is a story about a grandmother, a wonderful neurosurgeon, a tree and me…

Click here to subscribe to IBTA’s “Brain Tumour” Magazine and receive their 2014 issue with my article in it. You can also check out their website for more information at theibta.org

 

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IF ONLY FOR ONE I talk the talk and walk the walk

If you know me just a little or read my casual chatter you know I attempt to walk each day in an effort to keep clarity & physical well being in my life.  It get’s to be a tricky balance in the AZ heat but Im still managing to average 5 miles a day with a 7 mile target in mind.  One might think in the middle of the desert  ”BRAIN TUMORS”?  So go with me on my WALK for a minute:   I am all alone walking, self talking my plans and agenda etc.   You know minding my own business SWEATING !! drinking lot’s of water but enjoying my walk.  So visualize  I live out rural lot’s of DIRT, CACTUS and  homes with acre lot’s etc ( occasional coyotes LOTS of rabbits and lizards) parts of the area are paved some are not  yadda yadda.  So this particular day I was just getting in the grove when I see this little truck coming my way and a hand waiving out the window as it  pulls up next to me.  It’s my neighbor  she tells me how she really wants to start walking and someday she will get out here with me LOL  We laugh because she touched my shirt and its soaked  only because I wet my white long sleeve shirt before I leave and she thought I was sweating HA HA  and I don’t even get a mile and it will be dry.   She says; I stopped because you have your foundation stuff & I know you help kids and all with tumors but I wanted to see if you could help encourage an adult.   ME : I help all families.   Most people think it is just kids because it’s fun.    We try to bring a light hearted look to a serious subject.  I know from personal exp when dealing with BT you have plenty of time to HAVE to be serious so.  We encourage ALL AGES.   She proceeds ”  I met this lady at our vacation bible school group and she has a brain tumor.  She is a young mom  I told her about you and I was hoping???  Well I was hoping you could give her some support.??  ME:  Perfect timing  group is this week I will contact her and we will help her not feel alone.   neighbor:  COOL!  I was hoping you would be able to call her.              So BT buddies   when you talk the talk  and learn to WALK THE WALK   people will come!   Brain Tumor Awareness it happens when you least expect it.   When your a voice for BT awareness like me  it will happen in the dry barren desserts of AZ.   I should never be surprised about my if only for ones! and where they take place.  I will live with anticipation for my next ONE

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